It’s day 19277492 of complete isolation from the big wide world. Yes, that’s a slight exaggeration I know, but when you’re parenting a child with complex needs and your entire support system has been ripped away from you, that is pretty much how it feels.
Still, if I take away the fact that I’m surviving on roughly 1-4 hours’ sleep per night, I’m getting very little time during the day to do anything for myself and I’m absolutely run ragged with a million and one things on my to-do list, I’m actually doing okay.
More importantly, I’m enjoying a large chunk of the time I’m getting to spend with my child with no distractions, no appointments to attend and nowhere to go. Don’t get me wrong, there are plenty of moments in the day I’m not finding enjoyment in such as cleaning sick, dirty nappies and teething troubles. But overall, I’m finding time to smile just by being with my boy, here in the moment. The little boy who has no idea why the world has just stopped.
Needless to say, it’s hard for all of us. For the most part we’re no longer living, we’re just existing. We can’t go to the shops, we can’t go out for lunch, we can’t take our children to experience new places. Schools are closed. Lots of people can’t go to work. All of a sudden, the outside world is a threat. Social interaction that many humans thrive on is now to be avoided to eliminate risk. Life as we knew it three months ago has ceased.
The world is different, frightening and full of unknowns.
Perhaps I’m coping better because I’ve already had ample practise at isolating. Jaxon is 18 months old and we’ve spent over 200 days of that time in hospital. 13 weeks of that was last summer. The world was turning, people were living, and we were stuck inside the same four walls with no end in sight due to Jaxon’s feeding issues and uncontrolled seizures. I was depressed and by the end, having watched Jaxon fight for his life for four days on mechanical ventilation after his gastrostomy lead a total lung collapse, I had to claw my way back from rock bottom.
But I did. It took time, but I got there, and I learnt to smile again. Being cut off from the world and the people I loved bar a handful of my closest family all but destroyed me. I was determined to fight back and once discharged I set out to make memories with my boy. I wanted to make up for everything we’d missed out on, the summer fun and the family times. We’d lost so much time and I knew it wouldn’t be long before we’d be back there. I had to be kind to myself and remind myself that I was dealing with an unusual and difficult situation. It affected me greatly, but I did bounce back.
Now we’re here all over again only this time I’m not doing it alone. The whole world is united in this fight and everybody is waging a war from the confines of their own home, no matter how great or small.
I don’t doubt these extraordinary times will affect so many people mentally, but when it’s all over you will bounce back. Nobody can say how long that will take, for some it might happen straight away, others it may take a great deal of time, but you will get there and you will be okay again. You will smile again, and you will find enjoyment in life once more. Your mental health will recover.
So how do we get through the next few hours, days, weeks, months? However long this takes. I’m slowly discovering that the key to surviving this without having a complete breakdown is routine. It would be easy to let the days pass without filling them. Maybe not for all of us. But I know I’ve had days where I’ve felt like I can do no more than tend to Jaxon’s basic needs. A day or two like that is fine but I find that if I fill my days with purposeful and enjoyable activities, I feel better and my mood is lifted. That then rubs off on Jaxon and he seems happier too, although he struggles to show me.
Getting out of bed, showering and getting dressed. Now there’s nothing wrong with a PJ/duvet day or ten but I always feel more awake and ready to tackle the day when I’ve jumped in the shower and got myself dressed. It may feel like a real effort when you’ve got nowhere to go and nobody to see but do it for yourself and you may find that it’s just what you need to give you a boost.
Eating and drinking well is imperative, although something I too struggle with. Once I’ve tended to Jaxon and all of his needs, I barely have time to sit down never mind cook a meal. Some days I’ve stuffed my face with junk and that’s okay too. We’ve got to do whatever we possibly can to get us through and if that means a day or two sponsored by chocolate and crisps then fine, enjoy yourself.
We have little to enjoy at the moment after all.
Get some fresh air. If you have a back garden use it, have a picnic, get the paddling pool out. Look up to the skies, they’re so blue in comparison to how they are normally due to the reduction in traffic and air pollution. If you don’t have that space, then use your hour of exercise time each day if you’re not having to shield yourself or your child. I sat outside in the back a couple of days ago with Jaxon and that fresh air was a wonderful feeling.
I love to draw. I don’t pretend to be any good, but any kind of creative activity is good for the mind. Be it drawing, colouring, baking, crafting. It’s a therapeutic avenue and it passes the time. It gets you thinking and you have something to show for it at the end. Get your children involved, no matter their capabilities you can include them and they’ll probably get as much enjoyment from it as you.
Listen to music, watch TV, binge on Netflix. DON’T spend too much time watching the news. At the beginning of this crisis I was spending between 2 and 4 hours a day with the news channel on. I was falling asleep to the BBC news tune on loop in my mind. Then I wondered why I’d wake up full of dread and anxiety. A couple of weeks ago I made the decision to limit my exposure to the news to just 15 minutes in the morning, the briefing in the afternoon then occasionally a quick check before bed. Instead I fill our days with feel good films, CBeebies, music and game shows. I can honestly say since making this change, I’ve felt much better.
If you’re home schooling your children, don’t pile too much pressure on yourself to be perfect.
The majority of parents who are having to home school have no experience of teaching and the general feeling seems to be if you just do your best then that’s enough. If one day your kids spend 12 hours in front of the computer or TV that is fine too. There is no pressure to get it spot on, we’re all just winging it as we go. I’m meant to be doing regular therapy and exercises with Jaxon but some days I’m completely exhausted that I just don’t have the energy. If your kids are fed, clothed and loved in these circumstances then believe me, that’s enough.
Finally, make memories, be kind to yourself, enjoy the time you have with your children. Yes, it’s draining and tiring but this chance to be with your families in these circumstances such as a lockdown will (hopefully) never come round again. Make the best of the time you have with your little people. Then make the most of the time you have to yourself once they’re in bed (if unlike mine, they allow you to). Before we know it, this crisis will be over and life as we knew it before with the hustle and bustle will return. Children don’t stay little forever. It’s absolutely fine and entirely normal to feel angry, upset, stressed and depressed about the current situation we’re all finding ourselves in. But we are all in it together so we have to do what we can to make the best of a bad time. One day this will all be like a bad dream, a moment in history. I know that for however long this lasts, without piling a ton of pressure on myself, I’ll simply be doing my utmost to make the best of the time I’m at home, just me and my boy.